Multiple Severe Allergies + School Won't Allow Packed Lunches?

[AllergyMumma]

Hello,

Please could I get some help/guidance?

My daughter has multiple severe allergies (Anaphylaxis) to:
-eggs
-nuts
-peanuts
-dairy
-sesame
-lentil
-penicillin

She is due to start primary school this sept, she will be joining Reception. I've spoken to a senior member of staff at the school regarding my daughters allergies and they have informed me that they do not allow packed lunches. They seem very adamant about this..

Last year at her first nursery (who also banned packed lunch), they made a mistake and gave her dairy cheese which resulted in my daughter having a severe reaction and nearly dying. Obviously after all of this I want to avoid anything like this ever happening again. She's 4 years old and she trusts any adult that helps her, I want to provide her safe food from home and eliminate anyone 'giving' her food that could potentially cause her harm... It's a large school with 90 children in Reception so I just want to reduce the risks as much as possible but I feel like I'm fighting against the school and getting no where.

The staff member made a flippant comment that "it's like opening your door and being hit by a bus, you just never know what will happen" which is NOT the same as suffering from multiple severe allergies. I feel really alone in dealing with this and wondering if anyone has experienced anything similar?

The bus comparison is nuts. Yes, anyone can get hit by a bus or other random accident, but on the whole if you stay on the pavement next to the bus lane you are unlikely to be hit. What they want you to do with school lunches is the equivalent of crossing a bus lane blindfolded daily and trusting the drivers to always stop in time. They will, of course, try to stop in time but it only takes one momentarily distracted driver to kill you.

My DS has similar amount of allergies (Epi pen etc...) and in primary school he always had packed lunch but in secondary he had school dinners. His consultant explained to us that it was important from a psychological perspective for DS to not stand out and to learn to navigate food. But this was secondary school. He only had one bad reaction and that was in cookery class.

In primary I think packed lunch is reasonable measure to control exposure. I would write to head make your case simply and point out that if they don't allow it they will need to ensure detailed allergen information on all their meals and that you will need to see it in advance on a weekly basis. If no joy then I would write to governors and complain.

As your child gets older you can start to navigate the school meals.

thank you for your suggestion i will def take on board and teach her 'am i allergic to this' at the moment she reacts quite badly to the word 'allergy'/'allergic' she shouts and cries no, and gets quite upset...she's traumatised by the cheese incident.

thanks for the insight regarding the school kitchen, you brought up some very valid points

We had a similar problem with school. DC was not eating school lunch because scared of a repetition of previous mistakes by school caterers that had caused serious reactions. I asked the dietician attached to the hospital paediatric allergy department to write to the head, saying that school lunches were not safely meeting DC’s nutritional needs and that DC should be allowed to eat packed lunches. She did, and it did the trick.

This - ask your GP to make a letter saying the following child suffers from anaphylaxis for the following foods: list

the child will carry two epipens which should be accessible to the child at all times (not locked)
all staff should be given Epipen training and anaphylaxis training on inset day.

it needs to be made clear this is life threatening

gp needs to state that all food within school such as sweets, cakes, birthday food or food in lessons needs to be discussed with mum in advance and ingredients supplied to mother.

gp needs to state mother will
supply packed lunches

gp needs to state other parents must be made aware of The allergies

my GP did it for £20 or the allergies clinic will.
copy and paste them cases of children who have died from it in school and the rules for them not being followed.

my allergies are life threatening. I carry two epipens at all times. Even gps don’t understand that if I use one - it needs to be replaced the next day as without two I’m a walking time bomb. My current GP gives me 4 at a time - two for work - two from
home. Children need more as they aren’t like me - they will forget to take them.

wrist braclet and Id etc at all times particularly on trips

Comes under health and safeguarding - packed lunches is a more than reasonable adjustment

I was a school nurse a while back and did allergy and anaphylaxis training for school staff.

The attitude of your daughters school scares me and I would be seriously rethinking my decision to send her there if I were you. They seem to have a cavalier attitude to anaphylaxis and a complete lack of understanding of the necessity for individualised care in children with medical needs.

I would have no confidence that they would keep her safe, or respond accordingly.

thank you for the suggestions i can ask all these questions when i go to see the kitchen tour. also a good point regarding documenting and checking with medical staff i didn't even think of that...

thank you so much for this template i will use this for my gp letter.

our gp are very good but they are quite stingy with epi pens they only allow her to have 2 and obv we need 2 sets (one for home and one for school..) but thats another battle for another day 😕

she has a special bracelet which lists (with images) her allergies and the deputy teacher said she cant wear this as she's worried it will get lost 😩everything seems like a battle with them.

i'm scared too. my husband seems to think we will have this issue at every school we go to, i'm just not sure what to do

thank you for this i have booked a telephone apt with allergy nurse tomorrow so i will chat to them and ask for exactly this x

That's totally absurd.

I'd add that to the list of reasonable adjustments you're asking for - I honestly can't believe that.

totally agree.

she said they have a special blue bracelet. but i want her to wear this allergy charm bracelet as she can easily look at it to remind her of her allergies....especially considering she has so many! i would happily replace it every time it gets lost (even though its £20 a pop 😂) thanks will add to my list

I thought all schools were nut free....
Re vegan lunch

No I don't think the reaction you are getting from this school is normal at all. Our school would accommodate each child with allergy requirements individually for their own unique needs. Get as much official stuff as possible so the school take it seriously. Or interview other schools and move her.

thanks for your perspective...ive only had this school to deal with so not sure if they are all like this. obv nurseries are a lot smaller and the one she is at now has been extremely accommodating.

Regarding the epipens - when I relocated I went through hell
to get an replacement Epipen - I used 5 in 5 days and was in a and E five days in a row and on steroids for 6 months at a high dose - it was only at this point the GP ‘got it’. On one occasion I was in her room with her looking at my DC foot and I just said Epipen to my daughter and she knew what to do - the gp finally got it that day.

it was literally minutes away from dying after then she gave me 4 pens every time I requested one.

they are expensive and they don’t last long - but you can use an out of date Epipen if the liquid is clear.

if you get a gp that won’t give you more even after asking try the allergy clinic or tell the gp they are past the expiry day.

m I remember one pharmacist arguing that I wasn’t being reasonable as epipens cost x amount. And I was like how much is my life worth as I’ve been to a and e 7 times in on year and epipens bloody hurt - do you think it is a laugh for me? I then showed her a picture where my face was twice the size, eyelids shut, mouth merged into nose etc and said that was me 6 weeks ago

they got it

trouble is the school hears allergies and thinks it is the same as intolerance and they are most definitely not the same thing

This is that super strict school isn't it, I've read about it. I actually thought it would suit my autistic daughter down to the ground (she is very academically able and would absolutely love an environment where everyone follows the rules rigidly and disruptive behaviour isn't a thing!) but the one thing that stood out for me is that she'd never do the family style dining or eat school meals.

They're in the wrong with this. They need to allow it. School rules are fine, strict school rules are fine. They do not override the law though, and your child has a right to reasonable adjustments. For goodness sake it's actually life or death stuff here. They're being ridiculous.

This is vitally important.

I have had to fight the Local Authority on several issues about my DS and unless it's in writing they deny it.

This sounds like a nightmare. I would look for another school.

My DD (12 at the time) had a single episode if angioedema and was given epipens for a short period. Her school was brilliant, immediately set up a health plan and gave information on who was epipen trained and what would happen.

I don't think your DD will be safe at this school if they are not taking it seriously.

If the school refuse to relax the rules as they believe there is no chance of any cross contamination. Ask them to put it in writing, this will definitely put them in a spin.

My eldest who is now 18, has multiple nut allergies and when he was in Year 4 he had a reaction to something he made in the after school cookery class and ended up in hospital. The school refused to accept any responsibility as they said none of the ingredients contained nuts and they were a ‘nut-free’ school. However, a member of the office staff told me that the kitchen was most definitely not nut-free as staff used it all the time.

The schools response to this was not to deep clean and ask staff not to use the kitchen, but to cancel the cookery classes.

They are super strict, im all for rules and happy to follow anything but not rules that will put her life in danger. The more I read on this thread the more I get worried I've made a huge mistake and i should be looking at a new school....i just didn't see this coming at all. I've never spoken to anyone as close minded before....perhaps she is just trying to scare me into following the rules bcus she doesn't want others to follow.

i'm hoping with my doc notes etc she can make an exception regarding lunches, but i'm now worried everything will be a battle.

From my experience with suing the first nursery i would imagine they wouldn't want to sign any declaration that they can guarantee she will be 100% safe in black and white as this can be used later in court to prove negligence on their behalf, so its a good call. they have been so unreasonable so far you just never know what they will say lol

my husband says i should go to the kitchen tour, go to see the lunch in action...highlight all the issues and concerns im worried about, say its not good enough and insist on her having packed lunches. if they still don't agree he said only then we should escalate further go down the disability route, doc notes, speaking to governors etc etc